Research That Matters (January 17 - 20, 2008)

Background and Purpose: Research in the area of caregiving has contributed to several effective, evidence-based interventions to support families affected by mental illness. Unfortunately, this research has consistently excluded the perspectives of diagnosed family members who are clearly involved in caregiving dynamics. The purpose of this project was to seek that perspective from individuals diagnosed with schizophrenia in order to explore their perceptions of how caregiving affects them and their families. Methods: Interviews were conducted with twenty individuals diagnosed with schizophrenia (10 men, 10 women) representing a range of lengths of illness (4-26 years) and racial identities (30% of the sample self-identified in non-white racial categories). The individuals participated in a semi-structured interview exploring definitions of care and experiences of receiving and giving care in the familial, institutional and community contexts. Interviews were recorded with participants' consent, transcribed verbatim and entered into QSR-N6® software. The research team analyzed data files using a coding manual developed from the literature review and conceptual framework. Transcripts were coded independently by the investigator and a research assistant. Final themes and categories were extracted and validated through peer debriefing, triangulation of data sources and negative case analysis. Results: The participants discussed many positive aspects of caregiving from professionals, friends and family including feeling positive regard, respect and concern from and for their caregivers. They also, however, described a variety of negative experiences related to being care-recipients that were eventually categorized as “care-receiving stress”. Care-receiving stress described the tensions experienced by diagnosed individuals as they tried to negotiate the requirements of dependence and the desire for independence while in the care-recipient role. Stressors included feeling excluded from and unacknowledged in other roles, feeling concern for family caregivers who seemed troubled by illness demands and other issues, and feeling resentful about ways in which diagnosis put them in the position of others having power over them. Strategies for managing care-receiving stress included self-care, helping others, withdrawal from caregivers, despondency, resistance/non-compliance and expressing anger. Conclusions and Implications: This study suggests that care-receiving stress may be an overlooked contributor to caregiving burden in families affected by mental illness. Some of the coping strategies described by the participants are behaviours that are often implicated in increasing stress and burden for family caregivers. In addition, caregiver burden contributes to care-receiving stress. The awareness of burden in family members is a source of great concern to individuals diagnosed with mental illness. Addressing care-receiving stress and caregiver burden in conjunction may be the key to making current family interventions even more effective in benefiting the entire family unit. Families can benefit from interventions that mobilize mutual support based on mutual recognition of the pressures created by the need for care. Furthermore, identification of care-receiving stress could be used to aid individuals in developing health-promoting coping strategies that will enhance their lives and contribute to decreased burden in the family.